Turning the corner

Turning the corner

 

Over the last several weeks, I have been in recovery mode.  It is almost surreal to remember my last full adult sized meal being two days before my splenic embolism surgery.  Since then I’ve eaten sparingly, have tried to augment calorie intake with dietary supplement drinks, and other empty calorie choices.  But even with those, I’ve lost 35 pounds since February 14.  It is weird because food smells a bit differently and things I used to enjoy now make me gag.  I also have to be in the mood for certain items because one day it will be fine the next day, grotesque.  The kids have noticed changes in my appearance and are showing concern.  Mostly from the coughing fits, but more on that later.

The upside of the weight loss is I actually used to weigh what I weigh now so I have a lot of clothes that still fit me in the house.  I used to rotate closets from some yo-yo dieting I’ve done in my past and although not healthy, the practice has served me well at least from a clothing perspective.   In any case, I haven’t had to go buy a new wardrobe and where I am mentally with my fight, I don’t really care if I’m a year or three out of style.  I clearly have bigger fish to fry.

The kids came back from the campout with plenty of stories and delight.  They showed me their BB gun targets and Connor had a nice grouping on his.  They talked about the campfire, the skit, and even how they retired an old flag properly.  I missed not being there, but I also would not have done well had I gone.  I wasn’t nearly ready yet.

Monday I sent a note to the trial nurse letting her know that we have decided to hold off on the clinical trial until we got my pneumonia more in check.  She agreed, but asked if I could still come in this week to check the fluid pocket around my spleen.  On my last scan, they found fluid and had not seen it like that in prior splenic embo cases.  They had a bit of concern and wanted to make sure exactly what was going on.

Also on Monday, I went to go see my Austin oncologist and we discussed the test results from MDA and their desire for another CT scan.  Very pragmatically my doctor said that the insurance company would probably not cover a scan just five days after the last one.  But MDA would usually eat the cost of something like this if the insurance wouldn’t pay.  So getting the scan in Austin was out.

Labor day champs with a final round 59 in 2007

I sent out a note to some friends in Austin to see who might be able to drive me to Houston for an in and out.  As MDA was trying to schedule the scan, the time changed three times.  From 6:30 at night (which would have put us home around midnight or 1AM) to 8:30 in the morning (which would have meant leaving Austin around 4 to accommodate the Houston traffic) to finally 11:30 which worked out great.  My longtime friend and old golf partner Mike Ames stepped up and was the chauffeur for the day.   The trip was easy and I was able to both kiss my wife and kids before they went to school and love on them before they went to bed.

The only tough part was the storm.  Remember that lightning storm that hit Austin around 2AM Wednesday morning?  Well we hit it just after La Grange on the way and by the time we got to Katy it was a mess.  Luckily, we found a new route in by taking 99 to Westpark Toll to 59 into downtown.  Plenty of room, traffic was lighter, and drive was less nerve wracking especially in the torrential downpour.

When we got to the ROC (radiology outpatient center), it was pretty smooth sailing.  They processed me quickly, gave me my delicious barium drink, and even used my power port for the contrast injection.  After my scan, we hopped on over to the pavilion (far left end of the main building at MDA) and met with the doctor who performed the splenic embolism.  He said that the fluid around the spleen was blood that leaked out from the procedure.  We talked about pain management versus draining it and the risk of infection introducing a needle into the abdomen.  He also said that the hematoma would eventually be absorbed into the body like any other bruise.  I chose to take no action and deal with the moderate pain.  He also said that the spleen did die off and there were signs of it already being absorbed by the body which is a good sign. 

All in all, good news.  Nothing alarming and no cause for trial delay…on the spleen part.  But about the pneumonia.  I feel like I’m turning the corner with more energy, a slightly larger appetite, and fewer coughing to retch fits.  Those are all good things.  But I still have shortness of breath and cannot perform basic activities without having to stop and regain my breath at times.  It kind of sucks.  One day I was feeling pretty good and even thought that perhaps I could pitch a couple of innings for my son’s baseball tournament this weekend.  And then I went up the stairs and had to catch my breath.  I’m not sure that would translate well in the long run.  So I need to continue to rest and try to get better (so I thought). 

Thursday afternoon I had an appointment with a pulmonologist (lung doctor). It went well enough.  He agreed that the pneumonia wasn’t completely gone and prescribed another round of a different antibiotic.  Now here is the part that was weird.  He said, “Make sure you stay active.”  I told him that everyone else had told me to sit around and rest.  He then said that when you sit or lay down your lungs constrict and all that mucus settles and actually sticks together, making it harder to break up and cough up.  When you are active, your lungs open up, get more air moving, and ultimately cough up more junk…which is the goal, to get everything out.

It made total sense and since I was actually starting to feel better anyway I decided to do more stuff.  As soon as I got home I went out and played with our dog for a while and then actually lifted some light weights.  Looking at myself in the mirror most of the weight loss seems to be muscle mass.  It is actually a little embarrassing.  I don’t think my arms have been this small since junior high.  So I did a little dumbbell work, got some air in my lungs and was feeling better.

One thing that is concerning is another pain just behind my rib cage on my left lung side.  It feels like during deep breaths there is a “catch,” like it isn’t a smooth inhale or exhale.  It stutters. And it hurts.  Hopefully it is just old sticky mucus that is being broken up.  I’ll keep an eye on it.  I’m not concerned about a pneumothorax (hole or potential collapse in my lung) because I am still able to catch my breath and it doesn’t sound like it’s gurgling.  Plus, since I’ve had three doctors’ appointments this week, each time my oxygen levels are measured it has been upper 90s and just fine.  Upside of the weight loss is I’m snoring less and Nita is getting better sleep as well.

The lung doc said he wanted another chest x-ray the Friday before I go to the trial.  He thought if it hasn’t cleared up by then, perhaps we should push it back again.  I can tell you now, that ain’t happening.  We’re pushing forward.  I’m feeling better and better each day and with the new, more active Marco working with a goal, pain or no pain, we are going to get there.  I’ll be ready and April 10 will be the dawn of a new day.  I’ve never been this excited to start a round of chemo before.

So all in all a pretty busy week, but we handled it.  I guess it’s like the old saying God doesn’t give you more than you can handle.  I am just going to keep my faith strong, follow the doctor’s orders, and keep fighting like hell.  The kids are concerned that it is taking so long for me to recover, but I’m trying to do more with them to show that I’m getting better or turning the corner.  I love them so much and don’t want their 8 and 6-year-old energies being spent worrying about me.  I will beat this and am very hopeful and optimistic about the trial.

Never give up, never ever give up.  That’s what coach V said and that is what I will endeavor to follow. The kids are learning the lesson for sure.  There have been times where both have been frustrated, but neither thinks quitting is an option any longer.  Nita has embraced her new role at work like a champ and is already garnering rave reviews.  I suppose we’re a pretty tough little family unit and I’m proud of all of our efforts.  We are a family that loves each other fiercely and never gives up.  What more can you ask for?  Not much really.  May God bless you and your families as well.  Thank you for all your support, time, and prayers.  Team Marco

Oh and if you are around Austin on April 9 and want to do something before the Masters gets in full swing…Without Regrets is holding a charity run.  They are the group that sent our family to Maui on what seemed like a moment’s notice and helped us build amazing memories for the kids.  If you can’t run, you can donate if you like.  Here is the link to register for the run if you are interested: https://www.raceentry.com/races/austin-1020/2017/register

 

 

 

 

 

 

Decisions, decisions

Decisions, decisions

This was another week full of guard rail to guard rail emotions and activity.  Monday night Connor had a baseball game.  I took him, but of course was unable to pitch the game.  After all I had just gotten home from the hospital two days earlier and was in no shape to be bouncing around on the mound.  It was hard to catch my breath even on the bench at times, but I wouldn’t have missed it.  As luck would have it, Connor got his first hit of the season and even scored a run.  He was so excited and I was so proud of him.  It was a fantastic moment.  Nita missed it because concurrently, Josephine had a practice and Nita took her to that.

Skipping quickly to Friday, as soon as we got home from MD Anderson (MDA), Connor had a baseball practice.  I took him and intended to just sit in the stands.  But, of course, I had to help and did what I could do.  I wore myself out a bit too much and had a few coughing fits that even concerned the kids.  I know I need to take it easy and let this pneumonia heal, but it is hard to willfully miss out on your children’s stuff.  That is the entire reason I’m in this fight after all.  To spend quality time with my family.  So it makes me feel like I’m not fighting when I miss things like this, but that is my heart talking, not my head.

Connor standing on second after his first hit of the season

 Okay, so Wednesday we drove to Houston so we could be there for my early appointments on Thursday.  Unfortunately, that meant missing a game on Wednesday night in which Josephine got two hits and scored two runs.  She even bowled over the catcher scoring her second run.  Thankfully some friends who have kids on her team sent us pictures.

Josephine bowling over the catcher to score her second run

We arrived at the townhouse where we were staying around 8pm on Wednesday.  We stayed with two nice people whom we had never met.  One of the Aggie Yell guys (Beer Donkey) and his wife graciously invited us to stay with them and they were fantastic hosts.  It is hard to believe that there are still such nice people out there who will offer their home to strangers to help.  Now Sterling and Katharine have been reading the blog and on Aggie Yell, we’ve had a few “discussions,” but we had never met face to face.  So thanks again and God bless them.

Thursday morning, I had bloodwork and an EKG scheduled for 8:30 AM.  We arrived on time and they took about 8 tubes this time.  They took another 8 tubes for the trial intake on Friday.  I swear my arms are starting to look like I should be in Guns N Roses. 

Since my CT scan wasn’t scheduled until 3:25, Nita and I figured we’d see if we could sneak in early and get our appointments done quickly.  Well, they put us in the system and gave me my barium cocktail, but I didn’t get back to the lab until almost 5:30 and didn’t have the scan until 6PM.  The upside was I got a nice nap in, Nita got a lot of work done, and I watched my first episode of Dr. Phil.

Now the funny thing about the barium is it is supposed to clear you out so they get a good picture of your organs without…waste and such.  Since my surgery and pneumonia, I have been taking Vicodin and Dilaudid, both opioid based pain killers. They have a tendency to cause constipation.  Well let me tell you that barium is the great barrier killer.  I can honestly say that the three days’ worth of extra baggage that didn’t want to come out, well it all came out.

After the scan, we went to Nita’s uncle’s restaurant and our hosts joined us.  It was very nice; the food was awesome as always and the stories from Uncle Sammy always entertain.  He has so much history and has done so many things, it is incredible fun to hear of all his old escapades.  His son was also there and joined us for a while.  I actually had enough of an appetite to eat a few shrimp and a piece of eggplant parmesan, which again were phenomenal.

Friday, we reported to Dr. Kee’s office to get our results.  Here is where the decisions come in.  My numbers look good.  White blood cells are elevated because we’re still fighting the pneumonia.  Platelets are in the 200K range, and all the other numbers look fine.  Even the CEA score is staying amazingly lower with no chemotherapy at all, holding at 26 and change.  The question is, am I healthy enough for the study, which starts on Wednesday?  This is big because I want to get started and I have a good feeling about this study.  Plus, there is new growth in my liver and increased size in some lung lesions and some minor inflammation in some lymph nodes, but those could also be due to fighting the pneumonia.

The infamous Dr. Kee

Speaking of decisions, Saturday is the cub scout camp out.  The kids will do archery, shoot BB guns, and have a big campfire.  I really wanted to attend this with Connor and he really wanted me there with him.  We’ve been talking about it for about a month now.  However, the doctors recommended that I rest and certainly shouldn’t be overdoing anything.  So my job is to try to get better before Monday, so I can let the research team know if I’m in for the trial on Wednesday or if we have to push it back to April 10.  The best news is that my place is secure no matter what.  So I won’t lose my spot in the trial. 

This picture was from March 9, you can clearly see the weight change from the Dr. Kee pic

Well, walking up and down the stairs at our host’s townhouse was wearing me out.  Even walking around MDA made me stop and catch my breath a few times.  And as I mentioned before, at Connor’s practice on Friday, I coughed until I almost threw up.  So what do I do about the campout?

Friday night, both my calves cramped up.  This is weird because I’ve been drinking water almost exclusively.  In fact, I haven’t had a drop of alcohol in two weeks.  I also coughed into fits, but managed to get decent sleep.  Saturday morning, against my better judgement, I decided I was going to the campout.  After all, what was I saving myself for right?  Make the memories now, while I still can.  So I stared loading up the SUV with the tent, wagons, chair, sleeping bags, and all the other gear.  I had to rest between almost every trip to the car and house.  There was no way I was going to make it.  Plus, I had a couple of cough to gag fits while packing.

How am I supposed to hump all that gear to the campsite and then go off exploring with Connor when I can’t even load the car? I can barely keep it all together inside a controlled environment, much less outdoors (with allergies).  Then I decided I would drive up separately and help unload and set up the tent.  But two trips up our stairs and back and after wheezing on the second trip, I realized that wasn’t a good idea either.  So, reluctantly and somewhat tearfully, I had to withdraw myself from the trip today. 

I feel like I’m missing something big, but at the same time, at what risk?  I need to get over this pneumonia and I need to get into this study so we can start killing those cancer cells.  And let me tell you, getting over this pneumonia has been harder than some of the roughest chemo.  This stuff is no joke.

In addition to missing, well almost everything, I’ve had several invitations to the Dell match play event.  But in all likelihood, I wouldn’t make it across the water bridge.  And a coughing fit is no place for a golf tournament.  And can you imagine me dry heaving on the side and being escorted out by some security volunteer who might think I drank too much?  So again, my head and my body said don’t go and I have to follow that. 

I wish this would be easier, but I suppose that isn’t what is supposed to happen.  I guess I’m supposed to endure some of these trials and tribulations and overcome them.  I am presented with choices and I have to navigate the need to have versus the nice to have.  I still have faith and hope that things will turn out, but this last stretch has been a pretty tough test.  My appetite is still so low that I’ve lost a bit over 30 pounds now. 

So what do I do? Start the trial on Wednesday?  Or wait a few more weeks until I’m healthier? I’m concerned that I won’t have the stamina and strength to overcome the effects of the chemo in the trial.  And chemo is no joke either, it is hard enough when you are at your best.  So I’m on the fence.  I have until Monday to call the clinical trial nurse and let her know.  I really need some exponential gains over this weekend if that is going to occur.  But maybe I should just gut up and do it anyway.  I don’t know.  So this week, I am going to rest and pray for guidance.  I’ve made a few decisions already, some good, some not so good, but staying on track. 

All word math problems look daunting at the beginning.  But once you break them down into their separate equations and solve the little ones, the big problem solves itself.  So, I’ll just continue to solve the little problems, bit by bit, and hope I’m getting the right answers and staying on the right path.  Then the big problem will hopefully solve itself. Thank you all for your love, help, and support.  God bless you and if you want to pray for me to make the right decisions, I could use the help.  TeamMarco.

The Race Continues

The race continues

We used to have a joke at Dell that every fiscal quarter was a marathon.  During the 13 weeks, there was no time for pacing oneself, you just had to sprint and get as much business as you could until the last day.  As soon as you crossed the finish line, you discovered you had already started the next race.  There truly were no breaks during that time.  Well as most of you have heard by now, I had the walking pneumonia last week, but not the boogie woogie flu.

But first, the answer to the teaser from last week.  On Sunday night, my wife, best friend Pete and his wife, and Tim Kennedy and his lovely wife all had dinner at Steiner Ranch Steakhouse.  It was a lovely evening and he’s about as nice a guy as you would want to meet…unless you are downrange.  There is no doubt he is a killer and his work ethic almost makes me feel like a whiner describing my tribulations with cancer and now normal everyday diseases.

We talked a lot about MMA, deployments, some of his shows, and ballistics. I won’t betray any confidences or inside secrets, but it was a pretty cool evening and he was even nicer than I could have imagined.  His wife was sweet and of course Pete was on his own story game.  I was in the middle of my walking pneumonia and could barely speak for five minutes in a row and had to contain several coughing fits.  I ate about five bites of steak and took the rest home.

Two weeks ago, I mentioned in my blog that I was really feeling lethargic, had lost my appetite, and was struggling to catch my breath in between coughing and retching fits. I had lost 20 pounds in the course of three weeks and was eating portions that wouldn’t satisfy my six-year-old.  I can be honest now and admit that I was wondering if that might have been the beginning of the end.  And further, would I even make it to the clinical trial?  As luck would have it, I scheduled visits with my Austin Oncologist to get fluids and checkups in the two weeks leading up to the trial.  The first time, I explained my situation but it was easily dismissed by the recent spleen surgery and medications. 

The most alarming and punctuating part of my decline was on Tuesday when another neighborhood family and ours were going to join up and take the kids to the snake farm in New Braunfels. By now you all know my son is the animal whisperer and that I wouldn’t miss this for the world.  I got up, showered, dressed, choked down an ensure for some calories and started loading the car.  But there was a chill in the air and it went right through me when I went outside of the garage.  I knew then I couldn’t make the trip; and certainly didn’t want to be the reason everyone had to cut it short and leave early.  It was then that I knew something had to give.

The Llama mind meld

On Wednesday when I went for my fluids, I told them about my coughing, gagging, appetite, and lethargy.  Dr. Netaji listened to my lungs and immediately sent me to get a chest x-ray in the building next door.  I returned with my film and sat down to get hooked up to my fluids.  Dr. Netaji and his nurse Karen came to me and said, “We’re checking you in to St. David’s Hospital.  You have an upper repertory infection that needs to be knocked out intravenously and quickly.”  They said that oral medication would eventually do the trick, but with the trial coming so quickly, there was no sense in letting it linger or possibly get worse.  So off I went to the hospital across the street.

I was checked into a room and then immediately moved to another room.  I only mention this because I think one of my Doctor buddies made the switch happen; because I ended up in the best ward in the hospital.  In fact, it was the same ward where I had my cancer surgery recovery and many of the nurses remembered me (which I found shocking).  Nita came with me to get me checked in and was both worried and glad that this was happening.  They started on my antibiotics, breathing treatments, and all the other fun things you do to fix pneumonia, but I felt silly for having let it go this far.

My very first nebulizer treatment

What I needed to realize and need to fully comprehend now is that after the splenic embolism, my immunity is down.  I can’t just chalk things up to a mild something or other and expect it to dissipate on its own like it used to.  I need to take each little thing seriously as it comes up and not just try to tough it out.  Things are getting pretty serious now.  I’ve lost almost 30 pounds, still have a bird’s appetite, and am fighting for my life.  The trial is a nice thing to look forward to (more on that later), but is certainly not a guarantee.  I have reason to be positive and hopeful, but I really have to stay on top of all things big and small right now.

My cousin (the funeral director) stopped by, there were a lot of jokes about him showing up early

I had quite a few visitors come by to see me and it was very nice.  But possibly the best part was when Nita and the kids showed up.  The kids of course were fascinated by all the machines and gadgets around the room.  Connor saw the computer they use for scanning arm bands and medications and was thinking, “I wonder if I could play a game on this.”  We had to shoo him away from it more than once.  As the kids inspected me in my hospital bed, they noticed those leg compression things to keep circulation going.  Well Connor saw those and immediately started rubbing my feet, asking if that was helping.  What a kid.  The nurse brought them popsicles and the sugar and equipment were too much for them.  It was time for them to go.

Possibly my new favorite picture

So initially the medical team intended to keep me another night, but I was showing progress and they let me go late Friday afternoon.  I was so glad to be home.  Both kids were in the backyard playing and they immediately ran in to give me big hugs and tell me all about their day’s activities.  It was close to dinner time so Nita fed the kids, put them to bed, and then took a quick jaunt to the club for their St. Paddy’s day celebration (she absolutely needed the break). 

Later that evening, I broke into a coughing and retching fit that made me realize that I really should have stayed one more night.  When I went to bed, each time I rolled over it was the same thing over again. I coughed until my lungs cleared enough for me to breath normally.  I wondered if I might have to return to the hospital. It was exacerbated with the fact that I had to get up to urinate four times during the night.  When they pump that much fluid through you, it has to come out somewhere.  Each time I would get up and change levels I would launch into another fit.

The next morning came and I took a much-needed shower.  I took my first oral antibiotic and a sip of the new cough syrup and magically I felt cleared up.  I could take deep breaths.  I could get up and refill my water glass and not cough the entire time there.  I was clearly on the road to the mend.  Unfortunately, I had purchased tickets to cirque du soleil for Saturday afternoon.  Both of my doctors said, NFW.  I was too weak, immunity was too low, and I needed to rest some more and stay out of the public germ petri dish.  My wife took my mother instead and they and the kids had a great time.

I am feeling better, but still need to make a somewhat exponential gain in the next few days.  Thursday I start my baseline testing at MD Anderson for the trial.  Nita and I are staying with one of the Aggie Yell guys who lives nearby.  I feel very blessed to be in this specific trial.  Here is why.  When I was first informed about this one, it was specific to colorectal patients.  That means that they have more than a rough theory that any benefits will be to colorectal cancer patients. Secondly, when I was told about it there were only 20 spots open for the trial, but my platelets were too low for entry.  Two weeks later I was on the books for the splenic embolism surgery.  A week later on my follow up, I was accepted into the trial.  So is it luck that over the course of four weeks those other 8 spots weren’t filled?  Oh and I was put into “group two” which would receive two of the drugs instead of just one. 

So how does one categorize this?  Blind luck?  Or did both of my oncologists think that I could benefit the most from a trial such as this.  I can tell you by the way Dr. Netaji does things here in Austin, he is in no hurry to see me beneath the dirt.  I believe it is a combination of two caring doctors, a loving God, and the prayers of countless friends and family who made this happen.  As always, you may choose luck of the draw or any other combination of events.  But I will continue to believe that all these tests and challenges put before me are there to test my resolve.  As I keep trudging along, things keep opening up to me.  I suppose that is how it works in most things too isn’t it?  Work, family, friendships all depend on hard work and overcoming minor and major mishaps to become successful.  

Where are we now?  Well, we’re still on the path and we’re moving forward.  As “luck” would have it, the time I’m told to rest and recover is smack in the middle of march madness. My children are healthy, wife has a job, and we have enough from the auction and tournament that we shouldn’t completely crumble when my two hospital bills finally come in.  In fact, that out of pocket max should hit pretty quickly.  The trial drugs are paid for by the study and they even reimburse for travel.  So in spite of the challenges I remain positive, hopeful, and full of love.  To think, I’m actually looking forward to chemo again.

But, after all, I’m on a mission.  A mission to stay alive.  It was funny, during intake on Wednesday, the reception ladies asked me if I had any advanced directives.  I said, “Do whatever it takes to keep me above ground.  Anything!  If you had any idea how hard I’m working to stay alive right now, you’d understand.”  They looked at each other and said, “Okay, got it.”  I don’t think they really did though.  But after my kids came to visit me that day, it was obvious.  I have to keep living.  There is too much love and too much still to do.  Nita and the kids are my everything.  This entire ordeal has taught me many lessons, but that is the largest for sure.  God bless.  TeamMarco.

 

Seven Minute Ayubs

Seven Minute Ayubs.

Getting big muscle group work outs is not that hard.  You get to use a lot of weight and you can see results somewhat quickly.  Abs are a totally different animal.  Working out your abs requires three to five different core exercises.   But what if I told you, that you could, in fact, get your ab work done in just seven to ten minutes with very little effort on your part?  It’s called dry heaving for seven straight minutes.  And it works!  Even though I don’t have a six pack (due to the layers of fat underneath), trust me, my abdominal muscles are as strong as anyone’s right now.  And all I have to do is stand over the sink, wretch, and spit.  Thanks Cancer!  Downside is I think one of my “workouts” may have caused a slight tear – possibly resulting in a hernia, will get that checked on Tuesday when I go back for fluids. 

Saturday, Connor had another baseball game. It was cold and wet and we still played.  Connor had a great time and we eeked out a win in the last inning with one of our guys hitting a 3-run home run off some cheeseball pitcher just throwing grapefruits at them.  I didn’t feel great, but I was still getting the ball across the plate and in the zone.  Later that evening we attended a friend’s birthday party.  It was fun seeing everyone, but I no longer have the stamina for all of that.

The host came and sat with me for a few minutes and gave me some nice compliments about staying alive and doing it with a good attitude.  Nita later told me that he said, “If that was me, I’d be doing hookers and heroine until the end.”  I laughed because apparently, I was doing one of the two (more later). I also got a lot of feedback on the blog and how much people are changing their own family dynamics based on reading them.  That makes this way more worth it.

These last few weeks have been rough.  Some of my friends have been really concerned thinking I’m at death’s door.  I may be circling the block, but no one is on anyone’s doorstep just yet.  There was a perfect storm of pain meds, allergens in the air, and your body’s natural defenses.   I have had coughing fits and the aforementioned heaves every day for the last two weeks.  I finally remembered that I could take allergy meds and I started taking Benadryl for the allergies and that has seemed to help quite a bit.  Not completely, but a bit.  It is frustrating because my energy levels have been zapped during this latest fight, making me somewhat inaccessible and hard to visit with.

Even more frustrating is my inability to execute on plans.  I’m always thinking of a fun baseball thing I can do with the kids right after school, or a quick trip to the aquarium or main event, but instead I end up on the couch in mancave, under a blanket, trying to get some energy back.  My game face is taking a beating as it has been really hard to contain the pain and discomfort this go-around.  In fact, let me describe the allergy issue so you can understand how it goes every time I change planes (levels – sit, stand, lying down, one side or the other).

Here’s how it feels: So, you know when you have one stopped up nostril and you are sleeping or lying in bed?  Then you flip over to the other side and magically the clogged nostril opens while the previously open nostril clogs up.  Right?  Okay, imagine this same scenario with your lungs and mucus from your sinus and septum area.  You are laying on one side, everything settles and you cough enough productive junk out so that you feel moderately clear.  You go to sleep.  Then you switch sides (like you have done for over 40 years) and all of a sudden, all that junk settles in the other side…so you cough until that side is clear enough and the equilibrium sets in.  Rinse and repeat.  Toss in the occasional re-medication and pee during the night with each plane change causing disruption.  That has been the last couple of weeks. Poor Nita is also taking a beating having to suffer through my coughing and heaving fits at night.

I went to Texas Oncology to get some fluids on Tuesday and met with Dr. Netaji.  He asked about the trial and then immediately got on the phone with the lab at the hospital where my surgery was performed.  Five hours later I received a call from MD Anderson stating that my results were positive and I was accepted into the trial.  That means I will be starting the new trial meds on March 29 after a quick trip to Houston for baseline scans and bloodwork.  

A funny thing happened while I was with Netaji.  I told him about my abysmal appetite, and all the other stuff going on and he asked, “When did you take the last dilaudid?”  I told him last Friday or early Saturday.  He then said that it is a harder pain reliever than most.  And that after taking it over the course of three straight weeks that I need to ease off of the pain meds instead of quit cold turkey.

I straight up asked him, “Am I a junkie now?  Because I don’t even want to take that stuff anymore.”  He laughed and wrote me a small script and said to back it off slowly.  How funny, to think that it has gotten to this.  So, from the party this weekend, I suppose I was unknowingly using half of his hookers and opium formula.

The other good news out of Texas oncology were my numbers.  Platelets were up around 195,000; white blood cell count was at 12.7 (probably high due to fighting infection or still absorbing the dead spleen); and my CEA score was 19.9!  Again, that is a minimal jump from the last time I stopped chemo for even a few weeks.  I’m still betting on the anointing, quantum touch, oils, and prayer.  Heck, I've just added smoothies into the mix.  And ensure to make sure I'm getting protein and calories.  But only going up 3 points in two or three weeks is amazing.  Remember this summer we had the hockey stick and it was at 40 after five weeks.

Back to the trials, this is pretty big news.  We’re off for spring break, then two days of labs and testing on the 21st and 22nd, and then away we go.  I will be reaching out to some of you who offered lodging.  The first weeks of the trial I have to be there on days 1, 2, 3, 5, 8, and 15.  Then the great news is, I merely need to come in for an infusion every other week, then home for two weeks.  This is a much better scenario than I could have envisioned. Parlay that with this being a specific colorectal trial…and I’m in the group that gets two drugs instead of just one, and you never know what can happen.

The kids are totally on to the significance and severity of the situation now.  They have even been talking to their teachers and peers at school more comfortably and matter-of-factly.  We never attempted to hide anything from them, but at the same time I never announced that I was given a death sentence a year and a half ago and I’m on borrowed time as it is. 

The other day Josephine (who plans to win a million dollars on American Ninja Warrior) said she would take the family to a certain location when she won.  I’m not stating the location because knowing my group, we’ll end up on a plane next week.  Anyway, I asked if she was going to bring Connor and mom?  She said, “Yes and you too if you are still alive dad.”

Connor has asked a couple of times when I’m looking especially pitiful, if I was okay and if I was going to make it.  He then asks if there is anything he can do for me, while he gives me a hug and scratches my back.  My standard reply now is, don’t worry son, Daddy will die someday, but today isn’t that day.  Then we hug again and go back to whatever he was doing.

Josie after getting swabbed for Strep, still smiles and cuteness...the lessons are working

Wednesday night, Josephine was supposed to have a baseball game.  She had a fever and said that she didn’t want to go.  This is the same girl who cried when her first game was rained out, so we knew something was up.  I took her to the doctor early Thursday and ta, ta, da, ta, daaaaaa!!! (fanfare) She has strep, so it looks like her spring break starts now.  And we all go through the exercise of washing our hands five times more than we normally do.  She was a trooper at the doctor’s office, no tears and very few complaints about the yucky amoxicillin.

So, the job is to stay alive, keep my spirits up, and keep doing my best.  My coughing fits make it harder to have conversations with people, thank goodness for technology.  But God keeps bringing me along for the ride, so let’s see what the next adventure holds.

My appetite and coughing fits have forced me to skip a few lunches and happy hours with friends.  I have a five minute window to speak and then a coughing fit launches and hopefully subsides before it transforms into gagging and heaves.  So, it’s a little awkward to those who have seen me “looking good” the last few months.  The worst example was my best friend’s birthday celebration.  Three of my oldest (long not age) friends all went to dinner last night.  These are guys with whom I have finished off tomahawk rib-eyes, made asses of ourselves at Fogo de Chao, and generally acted like gluttons at times.  Well I could barely talk and I almost finished one slice of pizza (medium).  The guys didn’t let on much, but I know it was disturbing to them.  I kind of felt bad, but only because I know they feel the pain too.  That’s what real friends do and I certainly didn’t want to hand them another burden to carry around, they all have enough on their plates.

Last year's birthday dinner for Pete.  We forgot to take a picture this year.

I know I’ve said that with colon cancer you look good until you don’t.  Well, I still look good, I just don’t feel good.  My appetite took me down another four pounds which puts me at 20 pounds lost since the surgery.  So as mentioned before, if you want rock hard abs and need to shed that unwanted fat…Cancer is the answer!

Believe it or not I am in good spirits.  I have a feeling this is just a storm before the calm. Have you seen those memes about “without rain you wouldn’t appreciate the sun” and other silly little things like that?  I kind of have that feeling that this is my big dip to prove my worthiness and I must keep my chin up, faith strong, and family first.

I don’t know why I have so much faith in this trial, I just do (if I can just get there).  Plus, there is no alternative really, so there is that.  But it seems like the stars aligned to get me into this one.  That can’t be pure coincidence, can it?  I don’t think so.  So, keep those thoughts and prayers coming and I’ll fight to stay above ground and try to be pleasant about it.  Big news this weekend (not health related).  I’ll share with you on next week’s episode.  Everyone have a wonderful safe spring break.  God bless.  Team Marco.

Past the due date

Past the due date

Even with no chemo the week has presented some challenges.  This weekend was pretty easy, but I was still recovering from the splenic embolism surgery.  A funny thing about relativity is the pain was still there, but it wasn’t constant and it wasn’t intolerable.  So it almost felt like it didn’t hurt…compared to the excruciating weekend prior.  Connor entered the Cub Scout pinewood derby event and his army tank took two seconds and a third in his heats.  He ended up winning an award for most creative entry in his pack, but there was a lot of chatter in the auditorium about his “cool tank.” He was very proud of it. 

Later that night our club had it’s annual beer pong championship throw down.  Our folks go all out with uniforms, smack talk, and some pretty gaudy trophies. It was fantastic.  Nita stayed for the duration while I just kind of buzzed the crowd and eventually left early.  I’ve learned that my smell sensitivity triggers my gag reflex pretty easily and it sets me off into a fit that only anti-nausea meds can tackle. I just can't be around smoke anymore.

Baseball would come ringing in with a bang this week.  Josephine had a practice on Monday and I couldn’t help myself.  Even though I felt a bit miserable I still got in there and helped with hitting, fielding, and throwing.  This is tee-ball and would be the only practice before our first game on Saturday.  Several of these kids have never thrown or attempted to catch a ball before.  AAAAAAAND we have a game on Saturday.  Tuesday Connor had a coach pitch practice. I’m the official, unofficial pitcher for our team and we also had a game the following day.  I helped out with the practice and pitched the entire scrimmage over the last half of practice.

Wednesday was our first game, just in time for a cold front to come in.  Luckily our team did great, I pitched okay, and we were able to pull off a win with two outs in the bottom of the last inning.  We really do have a good bunch of kids and parents on this team and I’m looking forward to the season.  As far as my body…I was wiped.  Luckily each day my mother would come and rub down my calves and arms.  Bless her heart, it sure helped.  But I am learning that all this over the last couple of years has really taken a toll on my body.  My recovery times are really slow and I was looking forward to napping during the two days before our next two games (Saturday).  I’ll either learn to pace myself, accidentally get in better shape, or die doing my best.  Personally, I’m rooting for two.

I had the opportunity to visit a few friends in the hospital or recovering at home this week.  There is too much cancer floating around and that’s all I’m going to say about that.  I enjoyed helping and visiting, but as mentioned before, I wish there were fewer people who needed my help.  I am glad I’ve handled my illness the way I have and have become so well versed in dealing with cancer that I’ve become a go-to guy for questions; but at the same time, I really wish there were fewer people (especially friends) who needed guidance.  But it is also funny to have introduced into common vernacular…, “So, have you farted or pooped yet after your surgery?”  What was once considered a silly question is now pretty common in our little group.  I learned later that one of the guys I went to visit had kidney cancer but they got all of it during his operation…so no chemo and no radiation.  Great for the Lobo!

Josephine dresses for her 100th day of school (as a 100 year old).

On Wednesday, before I went to get my ashes for Lent, I stopped into a store to get some last-minute baseball stuff.  A very sweet woman asked if I was me (my name) and then asked if she could give me a hug.  She said that my blog has helped her overcome some personal issues she’d been dealing with.  It gave her the strength she needed to make a pretty big decision in her life and she was grateful.   It really helps validate the mission when things like this occur.  Another woman talked about my blog when I took Connor to get a haircut on Thursday.  It truly is amazing the reach this has had.  I’m humbled.

Visiting my friends after their surgeries had me reflecting again on all the milestones and purpose of my journey.  I don’t mean purpose like, “Why did this happen to me.”  I mean it like, “What else should I be doing with this gift of life?”  Tuesday was exactly 1 ½ years since my diagnosis.  As some of you long time readers may remember, I was told that just 5 years ago, I would have been given six months.  I don’t know if it is the prayer, anointing, homeopathic remedies, chemo, faith, or my main theory (more later) that has kept me around, but I’m glad to be around.  As sore as I am after three straight baseball nights, I’m glad to be here and even though I’m feeling like a crumpled-up coke can.

My main theory is that God has a plan for me and I’ve accepted the challenge. My job is to endure the cancer, the pains, aches, side effects, etc.  And I have to continue sharing my story to help as many people as possible.  My reward is time with my wife and kids.  I also get time with my amazing neighbors and friends.  It may not seem like much of a deal for you, but I think it is just fine.  I can tell you that after going through that first weekend after the splenic embo, that I have a higher confidence that there might not be much I can’t get through.  That was some really painful stuff. (I hope I didn't jinx myself there).

Even though I haven’t had chemo in a bit over a month I am still feeling residual effects.  The neuropathy is getting mildly better, but my fingertips and feet are still pretty numb.  You know how when you sleep on your arm funny, and then you wake up, and two or three of your fingers are completely numb until the blood gets back into them?  It’s kind of like that, but all the time, every day (but just the tips).  The upside is the cold sensitivity has mostly gone away.  I can drink iced water and grab things out of the fridge and freezer.  The downside is it is harder for me to do simple things.  Like loosen a double knot on my kid’s shoe.  I can see the knot, I can grab it, but I can’t tell the pressure I’m exerting on the lace exactly, if that makes sense.

My appetite has taken a beating.  Not much sounds or tastes good right now and even when I do eat, I cannot eat very much.  This has been since the surgery, I’m not alarmed yet, but I’ve lost 15 pounds so far.  I may have to start drinking some ensure shakes again.  In any case, I’m hanging in there and I have no complaints.  It reminds me of the axiom, “eat to live, don’t live to eat.”  So, I eat what I can and what I need to keep my energy level up.  I’m having to choose a pretty boring diet, and if I deviate from it, it upsets my stomach.  I’ve already had to defend whether or not I “liked the meal” on several occasions.

I followed up with the MDA folks on my tissue samples and they’ve requested the sample be sent to the sponsor.  So I’m not sure how much more time it’s going to take before the trials start, but I can wait, I guess I have to.  It’ll happen soon enough.  Until then, I’m doing my homeopathic things and my quantum touch sessions.  Also in mid-March, I get to have dinner with Tim Kennedy.  A friend purchased the dinner at my auction and invited Nita and me to join him and his wife.   That should be exciting.  Although I’m not looking forward to eating a six-year old’s portion of food in front of a man’s man.  But if he talks smack, I’ll take it.  Of course I’m going to take it, it’s Tim Kennedy!

What does this tell me?  That I’m alive.  I get another day/week/month with my beautiful family.  That I still have the ability to run around with these kids and share special moments with them.  My only regret is that it took this event in my life to really teach me the important things in life.  Sure, I’d had them told to me countless times, but bull-headed Marco didn’t get the hint.  Well, I have it now and we’re making the most of it. 

So, all the aches and pains, ice and rub downs, dry heaves, headaches, every bit of it is worth it.  I get to play a game that my children love, that I love, and do it at a pretty decent level.  I am not wasting away (yet) and I still get to make athletic moves and teach the kids, on both teams, good fundamental baseball.  And no matter how much I hurt, I get to continually teach the children that Martinez’ never give up, we keep trying, keep fighting, and keep going.  We don’t always win, but we certainly don’t give up.  What better lesson can you teach your kids?  Team Marco.